Denial?

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Denial?

Postby Lyssie » Sun Jul 27, 2014 12:07 am

Does anyone have issues with actually denying to yourself and others that you have a diagnoses such as Fibro?

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Re: Denial?

Postby carolad » Sun Jul 27, 2014 12:48 am

Yes :) Especially when I read some posts on here with people saying they are unable to walk or are virtually housebound. I wonder whether I really do have the same condition as these people because I can still work and do most activities (with some modification and a lot of rest). So I've wondered whether my tiredness is caused by some sort of vitamin deficiency or whether it is a result of a gluten intolerance...

And the pain may be related to my scoliosis, rather than fibro. It seems there is no way of telling. My GP 'guessed' that since my pain is mainly spine related, it is about 70% scoliosis and 30% fibro. That's just a guess though, it may be completely wrong!

So I really don't know. But in some ways it doesn't really matter whether I have fibro or not. For some reason I have pain and fatigue and I just have to find ways to live with it. Putting a name on how I feel doesn't actually change anything :)
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Re: Denial?

Postby iblinkin » Sun Jul 27, 2014 4:26 am

Hi Lyssie, yes i do the same and sometimes i think it's just natural survival instinct or something like that or just brainfog and keep doing things and paying for it in big pain later. :)
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Re: Denial?

Postby padders » Sun Jul 27, 2014 5:11 am

No I have never denied having it. I have had lots of tests to rule out other things or other illness diagnosed which has happened. Just because you can work and don't have major symptoms that makes you give up work doesn't mean you haven't got it. We are all different and fibro can be mild to severe. Mine started of like yourself working and doing normal things, but gradually got worse over time, I had to retire just over a year ago due to the severe fatigue and pain and yes the good old fibro fog! I also have arthritis in hips, hands and various other places and problems with spine. Never compare yourself to any body else or think that because it is mild it isn't fibro, by doing this you could be over doing it then get a massive flare up which can last a long time and even not get back to were you are now. Personally I would be pacing myself carefully and resting as much as possible so that a flare up doesn't come and knock you over, not saying give everything up but just becarefull you are not overdoing it because you are in denial.
Hope you feel better soon and look after yourself.
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Re: Denial?

Postby Harrison264 » Sun Jul 27, 2014 9:06 am

Four years after diagnosis from a rheumatologist I am still not convinced I have fibro. I have had serious bouts of fatigue to the extent that I couldn't drive a car safely, all put down to Fibro. After insisting on help, I was referred to a Sleep Clinic and it was found I have Sleep Apnoea and now have to use a CPAP machine (or a CRAP machine as I call it!). I was suffering for months with increasing pain when walking and connected it to Fibro. When it became unbearable I insisted on a referral to a specialist and, after a MRI scan, it was discovered I had collapsed discs and a trapped nerve. It was also found that I have OS in my hip, knee and foot. I still ache all over but is this Fibro or something else I am yet to discover? Who knows?
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Re: Denial?

Postby Tally1068 » Sun Jul 27, 2014 10:19 am

padders wrote:No I have never denied having it. I have had lots of tests to rule out other things or other illness diagnosed which has happened. Just because you can work and don't have major symptoms that makes you give up work doesn't mean you haven't got it. We are all different and fibro can be mild to severe. Mine started of like yourself working and doing normal things, but gradually got worse over time, I had to retire just over a year ago due to the severe fatigue and pain and yes the good old fibro fog! I also have arthritis in hips, hands and various other places and problems with spine. Never compare yourself to any body else or think that because it is mild it isn't fibro, by doing this you could be over doing it then get a massive flare up which can last a long time and even not get back to were you are now. Personally I would be pacing myself carefully and resting as much as possible so that a flare up doesn't come and knock you over, not saying give everything up but just be carefull you are not overdoing it because you are in denial.
Hope you feel better soon and look after yourself.
Lisa


Totally agree. Bit in Bold especially.
Fibro from everything I've read, can range from mild pain and a bit of mobility discomfort to being wheelchair and housebound. It doesn't make it any less fibro. I've never denied it. Hell it took nearly 4 years to be diagnosed and was a major relief when I could read all about it (I had no idea what fibromyalgia was) and understand why I felt so bad.
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Re: Denial?

Postby Theresa34 » Sun Jul 27, 2014 10:39 am

Sometimes I wonder if I have it when people say theyre bed bound and housebound and can barely move. I'm not at that point. I do have the pain and I use a cane sometimes but not lots. There are days I can do loads of housework and move furniture and then other days like Friday where I had a monthly shop delivered and even though my 3 kids helped put it away I was so badly fatigued I could barely walk round the house without wanting to flop down. There are so many ups and downs with this disease it sometimes confuses me lol I also have been diagnosed with arthritis so sometimes its hard which one is causes the pain or the fatigue!

I take each day at a time. I don't have a choice but to push forward as I said, I have the kids. If I was bed bound or housebound, there would be no one to take them to school or fetch them. No one would tidy the house. Things would pile up etc. I do rest as much as possible while they're at school but its the beginning of the summer hols so we will see how it affects me. Six weeks of them being at home, arguing. Joy! :crazy:
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Denial?

Postby gilld » Sun Jul 27, 2014 12:26 pm

Hi. I don't deny it. It is so variable and little understood even by the professionals. I have a fibro specialist in Spain who has knowledge of all aspects. I think sometimes having a rheumatologist can mislead especially whenhaving to deal with benefits as there are so many assumptions and you can get lumped in with the various types of rheumy. I had and still have psoriatic arthritis, but fibro is so much more. Never deny it to youself...explaining to others could take hours!...but learn to pace yourself and never force youself beyond what your body will take as it will have it's revenge!
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Re: Denial?

Postby krysta » Sun Jul 27, 2014 7:01 pm

If u have the symptoms u can't deny it. Fibro now rules my life. I make the most of my good days and rest and relax on my bad days. I have had fibro now for 12:years.
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Re: Denial?

Postby denys » Sun Jul 27, 2014 7:59 pm

I dont deny it, I dont know why anyone would :?: :?: :?: :?: For me its all about trying to control it so that I can still have some sort of life.

As has been said everyone is different and so we all have to make different adaptations to what we could do once and what we can do now, no-one can say they have a worse case of fibro or a lesser case of fibro than the next person, as pain is subjective, fibro is fibro and is a horrible condition to live with.

Add on all the other conditions that go hand in hand with fibro and its a well done from me to everyone who keeps on fighting :-D :-D :-D :-D
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Re: Denial?

Postby carolad » Sun Jul 27, 2014 9:24 pm

denys wrote:I dont deny it, I dont know why anyone would :?: :?: :?: :?: For me its all about trying to control it so that I can still have some sort of life.



In my case, I deny (or at least doubt) my diagnosis because my symptoms could be attributed to other things :) It could be fibromyalgia....but it also could be scoliosis, or a vitamin deficiency or 'leaky gut' or gluten intolerance or a sleep disorder. Or it could be a combination of these things. The scoliosis is definitely a cause of my back pain....it may also cause my neck/shoulder/hip pain and headaches. Although the rheumatologist has put the label of 'fibromyalgia' on me, I'm just not convinced...

But although I have doubts about my diagnosis, I certainly don't deny that I have health issues. And the cause is irrelevant really because whatever name you put on it won't change how I feel. So whatever is wrong with me, I just need to find a way to live with it :)
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Re: Denial?

Postby dazzleship » Mon Jul 28, 2014 11:57 am

Well for me I guess I've been denying it to myself - refusing to accept that I have something that is affecting my life and my mobility.

Like others on here have said, I'm I suppose a "mild" case in that I still work full time and drive a car etc etc. But that doesn't mean that my life hasn't been affected by this awful illness. Take this weekend for example - one outing for a couple of hours with my husband on Saturday and I'm still paying the price today, having had no choice but to rest all of yesterday I'm still in quite bad pain today but struggling into work regardless bcause I've had time off lately and I don't want to have more.

I know I need to start accepting it more - because as one of you said (sorry can't remember names today) ignoring it could cause a major flare up.

I guess though that it is slowly dawning on me that this illness that was - when I was diagnosed two years ago - "just" random pains all over my body is now much worse - I can't walk anywhere outside without my two crutches, I get terrible bouts of fatigue, and absolutely awful neck and shoulder pain.

It is easy though to be in denial - of course it is. None of us want to be facing an illness such as this, which is so uncertain as to what will happen in the future.

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Re: Denial?

Postby denys » Mon Jul 28, 2014 5:36 pm

Exactly Carolad, that was what I was trying in my own foggy way to say, the important thing is learning to deal with whatever it is in a way that suits us as individuals so that we can have a life.

I hope you get some straight answers soon but in reality as you have said it wont change anything unless its down to something they can fix :shock: :shock: :shock:
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Re: Denial?

Postby MichelleJ » Mon Jul 28, 2014 8:03 pm

I'm not in denial about having fibro and m.e, never have been. Its clear to me that my diagnosis is correct and I am severely Effected by it. I'm a single mum so I have to carry on but without my carer and family I would be stuck and prob wouldn't barely leave the house as can't drive far and need a wheelchair outdoors but can't self propel it so am reliant on my carer to push me. But with the help I have in place I cope and manage to have a decent quality of life, very different to what I used to have but fine. I would obviously rather I wasn't ill but by telling myself I don't have it I would only be preventing myself getting the treatment and help I need to manage it and keep it under control.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: Denial?

Postby carolad » Mon Jul 28, 2014 9:39 pm

denys wrote:Exactly Carolad, that was what I was trying in my own foggy way to say, the important thing is learning to deal with whatever it is in a way that suits us as individuals so that we can have a life.

I hope you get some straight answers soon but in reality as you have said it wont change anything unless its down to something they can fix :shock: :shock: :shock:


That's exactly right - I think acceptance of your health problems (whatever the cause) is the key thing. Once you accept it, you can then start making changes to make the best of what you have :) It used to frustrate me that I didn't have a definite answer about my health issues, but I can honestly say I'm not bothered now. I'll never know for definite what is the cause of my symptoms and I've come to terms with that. So I would say I accept my limitations, while being sceptical of my diagnosis :)
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